Sydney's Journal - March 2005
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Just like clockwork. About 4 weeks after a transfusion I start feeling cranky and sore and very tired. Then by the time 5 weeks comes around I'm due for another one. The doctors have run lots of tests on me, but haven't gotten any answers. Here's hoping they find some soon.
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I love being outdoors. Today Mama and Dada took me on a picnic at a wonderful outdoor place. There were lots of pretty trees and the weather was so nice. And there was this big pool of water in the middle of it all. It was very clear and very very cold. Believe it or not there was a bunch of people swimming in it. Too cold for me. I'd rather just sit by the edge and watch them all. I'm a people watcher.
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Tonight was not a good night. Mama and Dada had flushed my Broviac tube like they do every night and then Mama started getting me ready for bed. Within 30 minutes I started to feel really bad. I felt cold and started shivering. Mama rushed out with me and told Dada something was wrong. The next thing I know we're all in the car rushing to the closest hospital.
Before Dada could get me out of my car seat I threw up everywhere. He grabbed me in his arms and rushed me in to the emergency room. Even though the waiting room was full, a nurse quickly took us in back and started checking my vitals. I had a really bad fever. More nurses and a doctor came in and they had to take all kinds of samples from me and that was not fun. Dada and Mama looked really worried and the nurse looked worried too when she came in later and checked my temperature and said that it was now 107. They were pumping me full of medicine to try to make it come down, but it wasn't working yet. I was feeling so sleepy.
After what seemed like forever, my temperature finally started to drop and I started feeling much better. So did Mama and Dada. The doctor still wasn't sure what caused it all so I wasn't going to get to go home until they found out, but they decided I should go stay at my regular hospital where my regular doctor was. So at 2:30 in the morning Mama and I got to take our first, and hopefully our last, ambulance ride.
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One of my doctors came to our room and started talking to Mama and Dada about what happened the night before. He believed that a nasty bacteria had formed in my Broviac tube and had gotten swept in to my body during my regular flush. We had to wait a few days to see which bacteria it was from the samples they took the night before. Apparently blasting concentrated bacteria directly into one's bloodstream is not a good thing. Turns out my body went into septic shock in an effort to fight it off. My tiny little body wouldn't have been able to fight it off alone, so it was a good thing Mama and Dada took me right to the hospital when they did. If I hadn't gotten antibiotics right away...
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Since I was already at the hospital and I still had to wait for the bacteria results my doctor decided it would be a good time for another bone marrow sample. Um, please no? They wanted to get another look at my marrow to see if it was making lots of red blood cells. I didn't have a say in it, so once again they took me away, got out that big nasty needle and stuck it in my hip bone. I'd be glad if I never saw a needle again.
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So now they know what was probably growing in my Broviac tube. Of all the bacteria I could have gotten flushed into my bloodstream, it turns out I get one of the worst ones. It would have been deadly for someone like me. I can't pronounce the name of it, but it even sounded nasty. But since they now knew what it was, they were able to send me home with the exact antibiotics I needed. Boy was I glad to get home. I hope we never have to go through that again. Oh, and on another note, they say my bone marrow is making lots and lots of red blood cells. It just doesn't want to share them with the rest of my body. What's up with that?
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Today I was at home feeling much better after my stay at the hospital and all of a sudden the doorbell rang. Someone was there with a handful of balloons. And they were for me! I love balloons. There was a card attached and Mama told me they were from Miss Monica and Miss Madhu. They were a couple of ladies I met at Dada's work and they're a couple of my biggest fans. They had heard about my trip to the hospital and wanted to send me a little something to brighten my day. It worked!
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Today I got to meet the Easter bunny. Not the big scary one you see at the mall. I wouldn't get any where near that guy. The one I met is smaller than me and that's the only reason I would get anywhere near him. I still wasn't too sure about him, looking up at me with his beady little eyes. For some reason he made me nervous. Maybe it was because he looked more like an egg than a bunny. Or perhaps it was because he shook uncontrollably when you pulled his tail. Either way, I was a little nervous when Mama put me down outside with him to take pictures. After a while though we came to an understanding. I wouldn't pull his tail and he wouldn't shake uncontrollably.
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Dada likes to play something called video games. I have no idea what it is, but he pushes buttons on these big black things and stuff moves around on the TV. Well today he let me play too! I sat right next to him and we played against each other. It was something called basketball. I had no idea what the rules were, but that didn't matter. I took him to school. I was pushing buttons left and right and he didn't know what hit him. I don't know what the score was, but I had to have won.